This is quite belated but I was too excited to write more than a facebook post until now! Gracie had her last check up with the urologist on 12/11. I FINALLY heard those magic words: PERFECT!!!! Everything looked perfect on her ultrasound, perfect blood pressure, and clean urinalysis!!!!!!!!!!!! I still get so happy thinking about how wonderful this is! After all that she went through, what a relief!!!!!!!!!!! We will check in once a year to make sure her blood pressure and urine are normal, but that seems so manageable. And I am glad to have such a wonderful doctor keeping tabs on our girl. The best moment was when Gracie gave the doctor a Christmas card with a picture of her in her Doc McStuffins (Disney character) costume, and I do believe he teared up a bit! And Gracie was so proud :) Honestly, that was my Christmas Day!
The End!!! I really should say, "Are your kidneys gladder?" but that just didn't have the same ring to it ;) Gracie saw her Urologist for her first follow-up since her surgery. We went in for an ultrasound and urine test. The ultrasound was good overall, but showed just a little bit of kidney retention when her bladder was full. This is most likely due to swelling from the surgery and should resolve as the healing process continues. But instead of waiting a full year for her next ultrasound, they want her back in 3 months just to make sure that it does fully resolve. A bummer but not the end of the world. I was assured that this is extremely normal and common after surgery and they are "not concerned". Her urine sample was clean which is always a relief to hear, and Gracie has been eating, playing, and dancing up a storm around here. She has even gained a little weight! She is now a whole 27.5 lbs! Woo hoo! And Ben is 29lbs...... but who's counting? ;)
Gracie was, as ever, a trooper for her appointment so clearly cake pops were in order :) We'll keep you posted!
I know this might sound strange, but I feel (a week after the appointment) relieved that we have a clear answer about our next step in helping Gracie conquer her latest medical challenge. Last Tuesday (5/27) we saw our pediatric urologist and got Gracie's scan results. As it turns out, she does have a little bit of scarring on the upper poles of both kidneys. The doctor gave me a ball park percentage (as they just eyeball it) at about 5% of the tissue on each kidney. Not good, but it could be worse. The good news is that both kidneys are functioning equally and well. So we caught it as early as you can and now we know that she needs surgery, and it has to be the more invasive path as it is much more effective and appropriate for our case. It is scheduled for July 21st and here are the procedure details:
Ureteral Reimplantation SurgeryThe goals of surgery are to correct the reflux, prevent pyelonephritis (kidney infection), and preserve renal function. The surgical repair of reflux may not totally stop the development of bladder infections. It will reduce the chance of a bladder infection developing into a kidney infection. The ureteral reimplantation surgery consists of creating a longer tunnel of the ureter through the bladder wall. The surgery is performed through an incision (cut) just above the pubic bone (bikini incision). If both ureters need to be reimplanted, this is done through one incision. This surgery usually lasts between 2½ and three hours. Afterwards, the child will be admitted to the hospital for two to four days. Before surgery, the anesthesiologist will discuss a pain management plan with the family. After SurgeryAfter open surgery, activity will be limited for four to six weeks. No tub baths for five days. Return to school can be one week after surgery or when no longer taking narcotics for pain control. After reflux surgery, there may be limitations on physical activity depending upon your surgeon. Voiding every two to three hours as well as drinking adequate fluids helps healing. Your child may return to school the day after surgery. For more info on VUR: http://www.cincinnatichildrens.org/health/v/vesicoureteral-reflux/ We feel very sad that Gracie has to go through this but so thankful that there is an effective solution. Also, our amazing ENT will make sure that her airway is safe and under control for the procedure as Gracie is a tough intubation. I am happy to tell you that in the meantime we have her healthy and happy on a daily prophylactic antibiotic so she is not in any discomfort. We got the green light for travel, splash pads and normal life until the surgery. So we are braving our first flight with both kiddos this July to upstate NY for Ramsey's grandfather's 100th birthday party!!! So we are going to have lots of fun adventures, we will get through this procedure, and then our girl will be ready to rock again. And then no more medical mysteries please!!!!!!!!!!!!!!!!!!!! ![]() Out little radioactive isotope did very well today ;) Don't worry- she's not really glowing and supposedly will have "no side effects" from her injection today. PCH was great as usual, but getting the IV to inject the stuff was still hard ;( Gracie definitely voiced her displeasure at getting a "poke" but as with any shot, it was over fairly quickly and we were off to adventure around for two hours while we waited for the fluid to reach her kidneys. Our first stop was a tour of the gift shop, but then we got hungry so we stopped for breakfast at the cafeteria :) ![]() Then I asked at the information desk about a game room or play area. Well, they did one better and we found a full blown playground at the hospital! Cool! ![]() Before we knew it, it was time for Gracie's "pictures". With the promise of "no more ouchies", she was very brave about laying on the table and even let them strap her in.... I was surprised! Then we put some Jake and the Neverland Pirates on the Kindle (thank you Netflixs!) and Gracie just had to lay back and relax. And that was it! So all went as planned and we made it as fun as possible. This one wasn't bad at all, thankfully. But it was still a long morning and we would really rather be doing something else ;) We have our follow up appointment on Tuesday May 27th so I will share the results and decisions as they arise. Thanks again so much for your support and concern, everyone! Alrighty, the DMSA scan is scheduled for May 21st. We have to be there at 8am and it will be a long morning as we have to wait 2 hours after the injection for the isotope to reach the kidneys. I was able to speak with a tech and pepper her with questions about the procedure and she was very helpful. It's not going to be fun, but it's also not horrible. They numb the skin before the injection and that's the most invasive part. The rest is waiting and then laying on a table (while watching a movie or something) while they get images. And we get to be right next to her the whole time. We then follow up with out urologist on Tuesday the 27th to get the results. I just want to stress that even though this is a bummer, Gracie is doing really well. Eating, playing, happy, etc :) and I am just so thankful. We'll keep you posted!
Well, Gracie and I had a long morning but everything went well. We saw the Pediatric Urologist and had to check in at 8am so that I could fill out paperwork and Gracie could drink fluids so her bladder was full for her 8:30am ultrasound. She was pretty nervous about the ultrasound having just had such a tough experience with the VCUG (which, by the way, I now know that kids are usually sedated for!! grrr....). But, as promised, it involved no "hurties" and we got to watch a princess video while the tech got the images. Then we had to get a urine sample, which we are pros at now! All of this took a few bunny snacks and promises of cake pops, but hey, whatever works! Then we told our tale to the P.A. and finally saw the doctor. He has ordered a DMSA renal scan to see if there is any scarring of Gracie's kidneys due to infection. If there is no scarring, then we can consider waiting a year, staying on prophylactic antibiotics, repeating the VCUG, and seeing if she has outgrown the issue. Or the scan could indicate that surgery is imminent. If the later is the case, then the doctor is recommending the more invasive, but highly effective, VUR surgery:
What happens during surgery for VUR? During the procedure, the surgeon makes an incision in the lower abdomen and exposes the bladder. The junction of the bladder and the ureter (the tube connecting the bladder to the kidney) is reconstructed to prevent urine from flowing backward up into the kidney. A catheter is left in the bladder to drain the urine for the first one to two days after surgery. So it pretty much sucks, but also solves the problem and negates the need for much more testing. But let's not get ahead of ourselves...first the scan: The renal scan will happen at Phoenix Children's Hospital. They should be calling us in the next few days to schedule it and then we follow up with the urologist again on May 20th. So more testing and more waiting. Boo. My saving grace is that, in the meantime, Gracie does not have an infection any longer and feels great. We have her on that daily antibiotic to hopefully prevent any further infections. I am pretty upset over all of this, as you can imagine. We just thought we were "done" with stuff like this, so it's quite a blow to be back to "medical life" which is not fun. Gracie has been so incredibly amazing through all of her struggles, but I won't be surprised if one of these days she just freaks out at one of these appointments. I wouldn't blame her because that's what I feel like doing sometimes! So I try very hard to keep life as normal as possible. So after our TWO AND A HALF HOUR appointment this morning (what 3 yr old can tolerate that?! Oh, Gracie...) we grabbed some cake pops and went to the park to play and feed the ducks, which made everyone feel better (even Mommy). Thank you all so much for your support during our latest challenge! More soon... I'm kind of feeling like a rock star mama today, so I am just going to enjoy my small victories here ;) I popped into the pediatrician's office (yes, I am a doctor stalker now) this morning and asked to see her rather than continuing to play phone tag. She obliged and I got the "official diagnosis" of urinary reflux with a grade of 3 on the left ureter and 4 on the right side. So on a scale of 1-5, she is up there. I also got my very own stash of urine sample cups so we can monitor Gracie as well as a prescription for a "maintenance antibiotic" to help protect her until we get in to see the specialist. Of course, our trusty pediatrician knows all of the best specialists in the valley and I have already set up an appointment with this pediatric urologist for Tuesday May 6th at 8am. Pretty good, right? And did I mention that this urologist knows and works with our amazing ENT? So if there is a need for surgery, I already have the right people in place. Phew! Less things to worry about....So on one hand, we have another challenge. On the other hand, we caught this before it caused Gracie any serious or permanent damage. Again, clearly because Ramsey and I are awesome ;) Haha..... Meanwhile, Gracie is thankfully feeling great! This is a huge relief- HUGE! I just about can't stand to see her in any pain or discomfort. So in the midst of this, we are insisting upon having fun when everyone feels well!! For example, we had an impromptu family dance party last night- yahoo!!!!!!!!!!!!! And today I turned the playroom into a pillow pit and the kids jumped all around :) This may be another bump in the road, but Gracie is amazing and we will conquer this challenge too. We will definitely let you all know what we learn on May 6th. And wish me luck for that appointment because they are going to do an ultrasound on a wee girl who just went through a rotten VCUG.... she is not likely to go along with this willingly. And she has to show up having drank 16 oz of water without peeing for 30 minutes! Hmmm..... I am going to need to be in full-on SUPER MOM mode ;)
Well, I held out as long as I could, but it's just easier to have all the info in one place ;) Not to mention the fact that all of the support and concern we have received is incredibly helpful, so I like to share. Thank you all for supporting us through this next (hopefully minor) adventure. I just copied and pasted the emails I sent to our family (below) if you are interested in the details. But here's the short version: Gracie has Urinary Reflux with a grade of 3-4. I will speak with her doctor on Monday who will, I am sure, refer us to a pediatric urologist. This condition is usually outgrown over time and can be managed with a daily, low dose of antibiotics. But in severe cases, surgery is required. I have no idea which will be recommended, but we obviously hope to avoid surgery. More soon!
Emails: Hello family,Well, I am hoping not to have to add another tab to my blog, so I am starting with this email. Poor Gracie girl started on March 19th with a UTI and we still haven't kicked it. After two urgent cares, one ER trip, many pediatrician visits, and urinalysis and cultures, we are on antibiotic number 4. She started with the common E Coli induced UTI infection but has now gotten the Pseudomonas bacteria somehow. I do not recommend googling this bacteria because it will scare the crap out of you (it's too late for me). This one is tricky to treat, so they now have her on Cipro. We are beyond the "norm" and our doctor is setting us up for further testing which will check for Urinary Reflux. I found this web page with a good description of the condition and the way they test for it: http://www.mmcsurgery.com/pedia_uro/conditions/reflux.html In the meantime we have tried it all- Gracie is pretty much potty trained, cranberry juice, probiotics, tons of water, rest, showers instead of baths, gentle soaps without dye/perfume.... you get the idea. So I have been on the phone with doctors today, getting information to and fro. As soon as they schedule us for this test we will let you all know. And hopefully in the mean time the Cipro will work. I am happy to report that Gracie has been able to eat and keep food down today, has no fever and is not terribly uncomfortable, although she still doesn't feel great. So we are relaxing in the back yard, watching Mickey Mouse Clubhouse and reading books. Not such a bad day, really ;) More soon, Lauren Hey all,Thanks so much for the support and for sharing some personal experiences. Gracie is definitely feeling better on the Cipro but still not quite herself. We did get a VUCG scan scheduled for tomorrow morning (the 18th). They have to use a catheter :( but no anesthesia so it is not super invasive. Just unpleasant. So Gracie and I have been using her Doc McStuffins (Disney Jr character) kit to play doctor today and I have been using dolls to explain exactly what will happen tomorrow. Here is another description of the test: http://kidshealth.org/parent/system/medical/test_vcug.html So it stinks to have her go through this but they get lots of info from this test so we can get to the bottom of this and get our girl feeling better once and for all! We'll let you know how things go and what the results are when we get them. Love to all of you, Lauren Hey family,Well, Gracie has urinary reflux. They rate the severity on a scale of 1-5 and we don't know the rating yet. Waiting for our pediatrician to call us. The test was a tough one :( so we're glad it's over. And we are glad we did it because the good news is that this is very treatable and we can protect her kidneys. We are home resting now. I wish I could say that Gracie is doing great, but she is worn out and pretty sore from the catheter. She said that the doctors need to "sit in time out for hurting her lady parts" :( Needless to say, we will be visiting a pediatric urologist very soon. More soon, L |
AuthorLauren, a Yoga Teacher, Choreographer, Director.....and new Mom!! I hope to add "tube slayer" to my list of credits. Archives
December 2015
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